Wednesday, 26 October 2011

Commitment Issues

It’s 5.42am and once again I lie awake considering whether to admit defeat and get up after another restless night or try my luck for another hours shut eye. I can’t stand this. Probably one of the worst things about RA... the massively disturbed sleep pattern. I have had it probably since I was diagnosed and if I’m not awake because of pain or restlessness in my joints, I am awake because I am thinking about it. My wrist seems to be the main issue at the moment (and the ravin’ mad arms I spoke about last time).

I have got a lot on my mind at the moment I suppose. Work is top of the list. I am struggling because of my wrist and, as ever, worried about my finances and the future. I would like to look at the possibility of settling down a bit, getting our own furniture and home one day would be nice. At the moment that seems so far off because surviving off one wage is very difficult. I appreciate that my partner is so supportive of my condition he opts to cover the main living costs we incur from living together but it frustrates me that I can’t pay my own way. I always knew that starting my own business wouldn’t pay for the first year or so and I was willing to accept that but times just seem to get harder and harder. Everything’s going up and wages are not... well obviously mine is nonexistent but my partners wage hasn’t reflected the increase in living costs.

I know lots of people are in the same situation when one half of a couple are living with disease. They rely on the other person physically, emotionally and financially. It’s not fair but in most cases it can’t be helped. I have considered several times trying to seek some extra money through a little part time job but the truth is I don’t know what I would do and I am frightened about employment again. Working for myself means I don’t have to take time off for doctor’s appointments and all the other things that come with RA. I don’t have to explain to my boss why I am off sick for the four hundredth time in two years. I hate to let people down and that is what worries me the most. Committing to a job, even part time, means exactly that... you are committing your time to your employer on a regular basis and even if they did consider taking me on with my condition (as I don’t think I could lie about it or leave it unsaid) I am not sure I can commit to that. I never know how I am going to feel from one day to the next. If I wake up feeling bad or if I am in pain with what I currently do, I simply take a few hours to get right and work my schedule around my condition so that my work is always done, just at random times. I have to consider the possibility that I know further surgery is along the road somewhere, which means taking a large amount of time off if employed (probably with no pay either) and I am always scared of other things going wrong or unexpected flare ups or crumbling of joints (as I unpleasantly learned with hip gate).

How do people do it? How do you make the choice and the leap to return to work and be ready to commit to an employer? It’s such a difficult time to even find a job in this country but I know that if I was an employer I would prefer to take someone on that I can rely on rather than someone with a chronic disease so if I unfortunately feel like that then employers would too, right? It’s so frustrating when I hear that people are struggling to find work because I know there are jobs out there but its stuff they don’t want to do. The fact is, those jobs are things I physically can’t do. Part time jobs such as bar work, cleaning, manual stuff etc would be physically challenging for me so there is no point in me applying because I know I would struggle. But people who say they are desperate for money would go for these jobs to tide them over right? Well it seems not everyone wishes to go to this level to earn a living. I think I’d be quite happy doing a little bar job if nothing else came along, a sociable job that furthers your skills in customer service is how I see it. The kind of part time job I would love just never seems to be available (because the majority or roles I want to do are all full time). I love to write, be creative, organise events and many other things but you have to be willing to work long hours to get a job like that, or in the case of writing doors never seem to open for me.

I know that not everyone has a job that they enjoy doing, most people work to live and spend all week waiting for the weekend. I don’t want a job like that; I want to love what I do. I didn’t go to university for four years to end up doing something I hate every day. There should be more help for people with chronic disease, disabilities and any other health issues to give them the support they need to get back into work. The help is simply not there at the moment. The only ‘support’ people seem to get is letters telling them to get off their arses or their benefits will be stopped. Not much encouragement then.

The state of work and benefits and government support in this country makes me sick. It makes me physically angry that it is so messed up. Of course there is no one to blame, it’s all our own faults as we are told but who is going to answer to the situation of people who really want to succeed in life and earn their keep but they are not getting the help they need to do so? Simple steps to help are all it would take too. A little encouragement, maybe some form of scheme in place that supports the fact you may have to take time off so that employers are not left without your help and more physical support (adaption’s to equipment that are EASY to implement, I’ve been through the current system and its appalling, takes forever and costs employers a lot of money).

Anyway, rant over for now. Feels good to let it out, we really need to help each other and stick together I guess in these tough times. Or more people need to eat cake so I can eventually do my job full time and get paid a shed load and never have to worry again. I can dream I suppose....

5 comments:

I read your blogs on a regular basis and I also have RA which I have suffered from since I was young. I am now 22. I understand and agree with everything you write, however as someone who has gone through University and persued my dream of becoming a Primary School teacher, I think that some of what you write comes across as very negative. I understand the exact negativity however I volunteer for Arthritis Care Young People's Project and I believe that there is a positive side to having this disease. I believe it makes people learn a lot about themselves and develops them into a stronger person.

I understand the pains but I get up every morning and limp around school in pain to do something that I love and help have an impact on a childs life.

You appear to have such a great support network and I love reading your work :) Its helpful to see someone else around my age going through the same thing. I hope this hasnt sounded negative, I just wanted to say that if you try to look at the positive side of the tough disease, things may begin to look up :) I have noticed that my arthritis feeds on the attention I give it ... I know it is exhausting and I know that at times its easy to want to give up. But would you really tell someone younger than us to do that?If I am positive and do my best to ignore the pain and carry on, then at the end of the day I am a happier more determined person :)

Look to the future and hopefully things will work out! As I say to all the young people I meet with the same problems as us, I just remind them to keep smiling :) It helps more than you think. Xxxxx

Thank You so much for your post - I am 31 and have had the disease for 3 years in January. I am also unable to work as my RA is severe, like yours. I'm hoping that treatment with a second biologic will give me some decent improvement so as I can begin rebuild my life. Being single I need to claim benefits, however, if I was in a partnership, I feel that would be just as bad, if not worse as I'm very independent so I would hate having to ask for financial help from a partner. From the age of 15 I started work at the weekends to pay for my leisure activities, etc. This continued through college and University( often working full time during holidays or extra hours when I was short of cash ). From 2003 until 2009 I worked full time. My first fuull time job was with a homeless charity and the second with a mental health charity. I did both jobs while struggling with my own mental health problems, eventually being diagnosed with Bipolar Disorder in 2008. This often required anything from 6 weeks to four months off at a time - I was just lucky that my employers understood and offered support (although I had to undergo sickeness absence reviews). This cannot be said for every employer, especially in today's climate. I did this kind of work because I enjoyed it and it was a worthwhile experience. However, I always knew that I would wish to change direction and try something knew, possibly something more akin to my degree, which is in English Literature ( like you I also love to write ) . Therefore, there is absoulutely knothing wrong with doing something you love, and in your situation I would think that there is nothing more important than wishing to follow your dream. Don't let anyone tell you otherwise! Anyway, my point in giving this spiel about my background in employment and education is that I'm definitely no waster and had I not been diagnosed with RA, which in it's severity stopped me from going back to work ( I had just been discharged from hospital having been admitted for depression a month earlier ) I would have most likely still been in employment or doing further FT study. I agree with you about the shambles that is the assessment process for welfare. It makes me angry and exasperated that, genuine claimants in need, are trated in such a way. I am coming up to my 4th assessment for the WCA in less than three years. It's an awaful experience and it is most definitely not designed to support the most vulnerable. With regards to the previous poster, I am glad that you are able to work despite your illness, however, as you will know not everyone with RA has the same experience so we can not all be expected to achieve the same outcomes. For example, for the last few months I have hardly been able to leave the house and I have needed help with my housework and bathing. I do hope that this is not going continue forever and that I will eventually be able to work Part time as well as study for my postgraduate degree on a part time basis. However, for the moment I am unable to do this and I will need time to build towards this goal. If that's not positive thinking I don't know what is! I think that Rheuma Girl's blog has always been positive and encouraging and she has coped amazingly well with having major surgery at such a young age. Also, after having this disease for a relatively short time this surely conveys it's fast and aggressive progression. It is severe and I think that she does amazingly well considering this fact. Sometimes we need to talk about our frustrations to preserve our mental wellbeing and this also helps fellow sufferers who can relate to us! Once again thank you Rheuma Girl for your efforts and support. ;D <3 xxx

great to read this post...puts into words exactly how i'm feeling at the moment too!! struggling to work 18hrs a week with my RA..have had both hips replaced and shoulders and ankles are damaged and give me a lot of trouble. my energy levels are crap and everyday is a struggle to go to work leaving me with little energy to do anything else. can't see myself ever working fulltime (hard to accept at the age of 27!) and its really hard when all my friends are off pursuing their careers and earning more than I ever will and all cos of this disease. its unbelievably frustrating!!! I have just bought a house with my fiance and so cannot afford to give up work even though it would prob be better for my disease. I live in Ireland and to try claim benefits is practically impossible! I don't see how we'll ever be able to save up for a wedding, let alone redecorate the house the way we want or go on holidays etc all the things we could do with 2 full wages coming into the house. I totally echo what youre saying!!! its so hard to be dependent on the other half financially as well as physically and emotionally, I don't know how he puts up with me!! anyway, keep blogging and telling it like it is!! xx

Shelly, I am 24 and I also have arthritis. Although I have this awful disease and suffer from the pain that it causes I am still an extremely positive person. Everyone is entitled to their own opinion but I don't agree with your comment to Rheumagirl. I can relate to so many things she says, as I can in this post........ After organising a fashion show to raise money for Arthritis Reseach UK, I realised that I wanted a career in organising events and managed to get a position as an assistant events co-ordinator. If it wasn't for having Arthritis I wouldn't have made this choice and would still be in a job that I was bored with. But Rheumagirl, you are right, working in events means long hours, and sometimes not even long hours but it's still shifts where you get less sleep. I have really been struggling, and just after 4 months of starting this job I was signed off as I had a bad flare up and could barely walk, determined to succeed in this job, I forced myself back before I was ready and ended up being signed off again. I was signed off for a month in total, before having to have injections in my spine and hip. These injections were magic and I am back on my feet again, however, it's meant to last for 3 to 4 months and 2 months in I am having problems again and fear that the flare up hasn't gone and that I will be crippled again when the injection wears off! So far my employer has been very understanding and supportive but I really don't want to have to take any more time off. So Shelly, although you have your full time job and manage fine, arthritis effects everyone differently and some people just can not manage. As positive as I am it is not stopping my arthritis from getting worse! When I read rheumagirls posts and she is writing exactly how I have been feeling, I find comfort in this, I am normal! I am a very positive person but it doesn't mean I can't get frustrated and upset now and then! sometimes I feel like no1 understands how much pain I am in or what I am going through, but I read Rheumagirls blog I realise I am not alone!

You go Rheumagirl! It's your blog, the story of your life, write it how it is!

Hi - This is the first time I have read your blog and ever commented on a blog! I have recently been diagnoised with RA at 28 and am still coming to terms with it allA random question....you said you run your own buisness what do you do?

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)